"As a student, I worked as a caregiver for a person with MS and quadriplegia over the summer."

Hello Elise, you assisted a person living with multiple sclerosis in her daily life during the summer and wanted to share your story on Carenity. 

First of all, could you tell us more about yourself?

I am currently in my second year of special education training. I'm someone who particularly likes human contact and I think that's what made me choose this profession. 

I like sport, I used to compete in competitive dancing and I also do a lot of cycling, running and horse riding. I love baking and creative hobbies. 

I am 19 years old and I am currently living with my parents. 

Why did you want to become a caregiver for a patient living with multiple sclerosis? What type of job was it?

At first I was just looking for a summer job. The current health crisis made this task more difficult than in previous years. So I was looking on various job sites and came across an advertisement for a job as a caregiver for a person with multiple sclerosis and quadriplegia. Without much hope, since the ad was old, I applied by filling in my contact information. 

I told myself that, even without a diploma, I could still apply, emphasizing the value of my disability-related studies. In fact, I have already had several experiences with people with disabilities, both children and adults, in residential facilities. But I had never before been with a person with quadriplegia. 

As a special educator, we most often work with a group of people with disabilities, helping to facilitate their daily life in order to develop their skills, and foster their independence and social integration.

I also told myself that this job could only be beneficial for my career path. It's a completely different kind of assistance that I've never experienced before: one to one. 

I applied for the job on a Saturday and the following Monday I was called by the assistant who was going on holiday and whom I was supposed to replace. We then agreed and that same afternoon I went to the person's home to visit and to be interviewed.

The appointment went extremely well, the patient was very kind and welcoming and above all, very happy to find someone to replace the current employee during her absence. I was therefore hired for a month as a personal caregiver. 

Could you tell us more about your role in the patient's daily life? How did you work together with the patient to set the rhythm of her day?

My days were from 9am to 8pm and included a 2 hour break between 2pm and 4pm. I worked in the patient's home. 

My role was to assist her in her daily life. Not having the use of her four limbs and having difficulty speaking, it was necessary to assist her on a daily basis.  

My days began with helping the patient start her day. At that time, I was in tandem with the nurse who came exclusively to bathe, help with the toilet and change the patient's clothes. 

One up, she would have breakfast, so it was up to me to prepare it and serve it to her.

After this stage, the morning was punctuated by the finishing touches to the patient's grooming (brushing her teeth, skincare, make-up), household chores (washing clothes, tidying up, etc.) and taking care of the animals present on the property. She was always present at my side, and made sure that everything was done properly. 

Lunch time would come, and I would have to prepare it to suit her tastes and desires, while at the same time incorporating certain nutritional considerations into the meal. 

At the end of the meal, I would help the patient back to her bed to take my break. During this time she would take a nap and/or watch TV. Two hours later I would come back with the nurse to help her up and change her clothes.

The afternoon ended with some final tasks, such as watering the plants, tidying up papers (something the patient was particularly fond of, being a former secretary) and preparing the evening meal. 

It was also my job to give her her various medicines. 

The patient's daily life was already very much shaped around the times when the nurse would come and go. We had a similar routine for the daily tasks to be carried out. 

What was the state of health of the patient you were caring for? Was she able to manage certain daily tasks on her own?

The person I cared for, being quadriplegic, no longer had the use of all four limbs and therefore could not perform any daily tasks on her own. Everyday care was therefore crucial for her. Though she needed help physically, she very much had all her mental capacities.

Did you encounter any difficulties during your time as a caregiver? If so, what were they?

I did have a few difficulties during my experience. The first was learning all the patient's habits and preferences. Another was related to the patient's speech problems, which could sometimes make it hard for us to understand one another. Sometimes, and understandably, she would get annoyed. As time went by, I was able to better distinguish more words, so discussions and requests became more fluid. 

So you were a professional caregiver. Did the patient's family or friends also help with care? If so, in what ways? 

Yes the patient's sons were there for her every day! She lives on a family property where one of her sons also lives. This son therefore takes care of all the "practical" things in his mother's life (upkeep and maintenance of the house, medicines and health supplies, etc.). Her other son, who doesn't live far from her home, takes care of all the administrative tasks related to his mother's illness (financial assistance, hiring caregivers, etc.). Her sons provide a daily, reassuring presence for her.

If you were offered the opportunity to be a caregiver again, would you accept it? Why?

As a student, I've offered my services to the patient again whenever I'm available. In fact, the patient was delighted with my services and would like to use me for occasional employee replacements. 

It was an extremely enriching experience for me. Caring for this patient has been the most important job I have been able to do so far. In addition to being a rewarding and human experience, it also led me to question my own practices: how can I avoid being overly attentive, or even infantilizing the person, knowing that he or she is quadriplegic? How to manage emotions and reactions? How to respect/consider the patient as a person and not as a subject? 

What's more, this was a job that taught me many complementary skills in relation to my future career as a special educator.

In closing, is there anything you'd like to say to any Carenity members who are also caregivers?

Being a caregiver is a very humanizing endeavor, which makes us learn a lot about others but also about ourselves. In my situation, the family was very close to the patient, but professional assistance was essential on a daily basis. Her sons placed their trust in us. 

I think that calling in professionals can help take some of the pressure off patients' loved ones and help to support both them and, of course, the patient. But of course, you have to find the right people! 

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Take care!